Need Second LLETZ, 6 month follow up shows I still have CIN 2 and 3. Anxious.

Firstly I'm so glad this website exists. I've spent nearly the past year feeling so alone with all of this, and when I feel that way I come on here to read other people's experiences and it's just so reassuring to know that how worried and horrible this has all felt is totally normal and that I'm not alone.

Last year in July, my first ever smear test showed up as severe dyskaryosis and high risk HPV. Then my first colposcopy in August showed the surface of my cervix was absolutely covered in white, pre cancerous cells and looked horrible. The biopsies from that showed i had CIN 3 and thereofre had the LLETZ procedure in September. 

Frustratingly my 6 month follow up smear test in April showed i still have severe dyskaryosis. At this point i felt so gutted, frustrated, upset and anxious. I spoke to the lovely nurse on the phone who i've had all my appointments with and she told me that I had fallen into the 5% of woman who the LLETZ doesn't work for, which has left me now feeling incredibly anxious. This whole journey has been pretty worrying and stressful but how i feel now is a lot worse. I think it's because I now feel like no statistics really work in my favour and therefor it's taken away alot of my ability to be able to reassure myself that I'll be ok.

I went for another colposcopy on June 1st this year. My cervix before and after picture was absolutely amazing, my cervix looks completely healthy compared to how it looked last year. However i had a polyps like growth sticking out the entrance of my womb which wasn't there before. They removed it there and then and did a biopsy. The results of that have shown CIN 2 AND CIN 3 and I'm booked in to have a second LLETZ on July 11th.

When i got my results saying CIN 2 and 3 i called up the colposcopy department at my hosptial and spoke to a nurse. I asked her if my results meant there was no trace of cancer. But she told me that the biopsies I had wouldn't show that and what they send off to a lab from my LLETZ procedure in July will be the indicater as to whether i have cancerous cells or not.. which has left me feeling pretty terrified and I currently have absolutely no idea what my chances of already having cancer are and i'm not having much luck finding anything out on google. But i have decided not to carry on searching online as it's just making me feel worse, and I'm just going to go with the flow. I know i'm in safe hands now it's just so hard not to worry and sometimes i feel totally overwhelmed.

I have to say I found the LLETZ procedure pretty disturbing. It was quick and the nurses were so kind and comforting to me during it. But I hate needles so I found the anestheitc side of it the most cringey thing I've ever felt. So I'm not quite sure whether I'm more scared about the LLETZ or whether or not I have cervical cancer. Probably a mixture of the both? I have a lot of love and empathy for every woman going through this journey. Thank you for reading this, I don't really know what I want from this but somehow i feel like just sharing my experience right now has given me a feeling of relief as I'm sharing it with people who truly understand.

x

 

 

Hello there.

I just wanted to drop you a quick line and send you a pretty ineffectual, but heartfelt virtual hug.  It is rotten luck to have to go through twice.

i can empathise with your feelings about the procedure.  How do you feel about short term anti anxiety meds to help with the procedure?  I know it’s not for some but it could just take the edge off.  From what i’ve read it’s not an uncommon request to the GP?

Please try not to worry yourself.  There’s no reason to believe it won’t work the second time.  It’s just such a shame you have to go through it again.  At least we’re in the process and getting the right care.

I know it doesn’t help but thinking of you.

Hi Jgfds, 

Similarly, I'm really glad this site exists. I've been reading posts since I received my letter re: severe dyskaryosis and my colposcopy appointment. Unfortunately, I couldn't get my LLETZ done under local anaesthetic, due to the distribution of my changes, so had some biopsies (results: CIN 2 and 3) then a GA for my LLETZ. Have been told that they've done the biggest LLETZ possible but that my margins aren't clear. The reason I've registered on the site is just to let you know that you're definitely not alone. I have clinic tomorrow and am fully expecting to be told that I need another procedure, so I'll probably be keeping you company in the "5%".

Try not to worry about the procedure itself, talk to the doctors/nurses about the bits you found most horrible last time. As bumblebee said sometimes they can also give you a little something pre-procedure if you're particularly nervous. 

I'm so sorry you are also having such a rubbish time. You're totally right re: googling, I felt much better when I decided to stop it, although I am still getting horrible waves of anxiety now and again. Sending you all my best, you can do this.

x